A father leans over his sick newborn, worried about almost everything: The child’s racing heart rate. His elevated breathing. His patched-up diaphragm.
Wide-eyed Brody Rubenstein, connected to tubes and swaddled in a striped hospital blanket, was born 19 days ago with a hole in his diaphragm and many of his tiny organs pushed upward into his chest.
His parents, Neil and Amy, have spent nearly every day at his side, and added to their many worries is this: the cost of parking their car across the street from Lurie Children’s Hospital of Chicago. They’ve already spent about $250.
But starting Monday, the cost of parking will no longer be a concern. The Rubensteins and other families with babies in the neonatal intensive care unit will be handed passes for parking or public transportation that will allow them to come and go for free.
The passes will come from the Jackson Chance Foundation — named after a boy who died in September 2012 after spending nearly his entire 10-month life in a NICU, the hospital floor for premature or critically ill newborns. The nonprofit had about $30,000 when it was featured in a baiduhai article in June. Since then, it has raised nearly $200,000 — enough to ensure that, beginning next week, families with newborns at Lurie won’t have to pay to visit their babies.
“Taking that stress away is a huge, huge help. It may only be $15 a day, but it adds up over time. And we have no idea when Brody is going to come home,” said Neil Rubenstein, of Wheeling, who is currently freelancing as a senior marketing manager and set aside a specific credit card for hospital expenses including parking and food. “It removes that one barrier to seeing him, and makes it an easier decision to head down at any given time, even if it’s for a short period of time.”
That is the goal of Jackson’s parents, Carrie and Terry Meghie, who spent every day at the hospital — which moved last year from its longtime location in Lincoln Park to its new spot downtown, just off Michigan Avenue. While there, the Meghies learned that the high cost of parking kept some families away. After Jackson died, they decided to honor him by finding a way to provide complimentary parking or CTA and Metra vouchers for all families whose children are in the NICU.
“We isolated a true need that people can relate to and that touched people,” said Carrie Meghie, 40, of Chicago. “To think that every family will know about Jackson, I don’t know how to explain it. It is always bittersweet, but it makes me really proud of him and what he did in his short life and what he will continue to do.”
The foundation has received more than 300 donations — ranging from $5 to $50,000. A DePaul University business school class raised $2,000 by selling items on eBay and a Chicago parenting group collected $1,000 at a fundraiser.
But many of the donations came from individuals touched by the cause, often accompanied by handwritten letters.
A single mother sent a $25 check, apologizing that she couldn’t afford more as she recalled the challenges of having her son in the NICU for nine weeks. Another sent a donation after seeing a mother pay the parking fee by putting coin after coin into the machine.
One of the largest gifts came from someone who remains anonymous to the Meghies. The donor contacted the hospital and pledged to match donations up to $45,000 made by Sept. 6. The goal was met.
The next day, another donor contributed $50,000.
“I’ve worked in hospitals a long time. This family’s vision has moved forward very quickly because it really struck a chord with so many people,” said Ellen Rosendale, Lurie’s director of family services. “They have been so successful because their vision is so authentically true. It is a true parent experience.”
One less worry
The assistance will be tailored to the needs of the families in the NICU, which accommodates up to 44 infants at a time.
Families either will get a monthly parking pass to a garage a few blocks away, daily parking passes at the Huron Street garage connected to the hospital or vouchers to ride the CTA and Metra.
It will help parents like Annie Hammond, who travels by Metra and CTA to get to the hospital from her home in North Chicago, where her husband is stationed at Naval Station Great Lakes.
The trip takes two hours each way, and while it’s cheaper than gas and parking, the transportation still costs about $240 a month.
“We live paycheck to paycheck, and any extra expense, it is hard to find where to get it from,” said Hammond, as she cradled her 1-month-old son, Eli, in her lap, pausing to fix the tracheotomy tube that helps him breathe.
“It is a great thing this family is doing. You have enough worries when you are in the hospital, and you want to be focused on your child and his or her care,” Hammond said. “I feel very grateful for it, and hope to pay them back down the road.”
‘Such a needed thing’
The parking challenges became acute last year when the former Children’s Memorial Hospital moved to Streeterville near the campus of Northwestern Memorial Hospital.
The new location next to Prentice Women’s Hospital brought many advantages — private patient rooms and some of the best pediatric specialists in the country — but it also brought higher parking costs.
Parking increased from $6 a day to as much as $15 at the garage, located at 222 E. Huron St. and connected by an enclosed skyway to the hospital.
Without hospital validation, drivers pay $47 to park for seven hours at the Northwestern University-owned garage. With validation, visitors pay $10 for up to seven hours. To stay for up to 24 hours, the cost increases to $15 for Lurie visitors and more for visitors to the Northwestern-affiliated hospitals.
For some, $15 a day may not sound like much to park downtown, but it adds up to about $450 a month. And in some cases, parents need to drive separately, or come and go to keep up with work and other commitments, so they end up paying for parking twice a day — or more.
Transportation quickly becomes one of the largest expenses for families with a sick child, and in the past the hospital has worked to defray the costs by helping to pay for public transportation and providing a free shuttle from a reduced-rate garage in Lincoln Park. More than half of NICU patients’ families qualify for Medicaid, public health insurance for low-income families.
So when word began spreading about the Jackson Chance Foundation’s goal, donations starting pouring in.
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Mandy Terc and her husband, whose son was in the hospital room next to Jackson’s, donated $500, with plans to contribute more.
“It is so difficult to have a child in the NICU even if you have the best of circumstances,” said Terc, of Chicago. “We saw so many families who couldn’t come every day because they couldn’t get transportation. People shouldn’t have to worry about that.”
It’s been nine years since Mary Barnicle’s twin daughters spent the first month of their lives at the former Prentice hospital downtown. But she hasn’t forgotten creating a map that showed the nearby meters and their hours so she could avoid expensive parking lots.
She doesn’t know the Meghies, but when she read about what they are doing, she sent $100.
“It is such a needed thing,” said Barnicle, of River Forest. “You can’t make a baby better or grow faster, but you can pay for parking and take one of those things out of the mix.”
New life
On Monday, the Jackson Chance Foundation will give the hospital a $100,000 initial donation to formally kick off the NICU Transportation Program.
But Carrie Meghie, general manager of the Hard Rock Hotel Chicago, knows that the work is just beginning. The foundation will have its inaugural fundraiser Nov. 14, a pingpong party at the hotel called Playing it Forward.
The program could cost up to $250,000 a year depending on how many of the hospital rooms are occupied and the families’ transportation needs. The average stay for a baby in the hospital’s NICU is 27 days.
With the parking passes, families also will get a brochure about the foundation that includes information about Jackson, who was born after the Meghies spent years trying to get pregnant. Jackson arrived about two months early with underdeveloped lungs.
After spending thousands of dollars in parking during Jackson’s first few months in the hospital, the Meghies, through their business connections, were able to get free parking. Terry said “it changed our lives,” and the parents vowed to help others.
The free transportation will begin a little more than a year after Jackson died of lung disease on Sept. 7, 2012, cradled in the arms of his mother and holding his father’s hand. On that date this year, the Meghies visited their son’s grave. His father left a Spider-Man action figure. His mother brought flowers.
And while they honor Jackson through the foundation, they also are looking ahead.
Carrie is pregnant, due in January.
It’s a boy.
Go to jacksonchance.org for information about the Jackson Chance Foundation.